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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Friday, January 16, 2009

Our Little CNA

Why is it when our kids are doing something cute the camera is out of reach and the video recorder's battery is dead?

Emily is our little CNA in training for her LPN. She is working very hard toward her nursing degree at the tender age of 3 years old. Emily loves to help take care of her brother Timmy. She helps us take his blood glucose levels, listen to his heart, lungs and stomach. She even tries to feed and bathe him.

We have used the same drug store for the past 4 1/2 years to get Timmy's diabetic supplies and medications. The employees have been told just how dedicated Emily is to trying to help take care of her brother. Earlier this month one of the employees cleaned up an old glucose meter and gave it to Emily to play with.

The other morning Emily got bored watching cartoons. She announces that she is going to go play "tea party." This is another of Emily's favorite pass-times. She can spend hours playing "tea party" with her dolls. So Emily goes into her room. Every once in a while I hear her doll say "mama." I don't hear Emily say anything, but I do hear her shuffling with toys. So I think nothing of her being qfuiet, not yet anyway. Ocasionally the doll says "mama." Nothing from Emily. So after about 15 mintues of hearing nothing from Emily I go in to check on her. Usually when Emily gets quiet this is a good sign that she is into something that she isn't supose to be. I never saw or heard her come out of her room. And she has been known to be quiet for long periods of time when playing "tea party." After hearing the doll say "mama' two dozen times, but nothing from Emily. I go in to check on her. What did I see? Emily sitting in the floor with her glucose meter and stethoscope laying on the floor next to her. The doll says "mama." The doll is lying face down with its head turned to the side and its butt in the air. The doll says "mama." After using four enemas on the doll, Emily has smeared Desitine diaper rash cream on the dolls butt. The doll says "mama." When I walk into the room, Emily is poised with Timmy's themometer, ready to take the dolls rectal temperature! I couldn't help but to laugh. I hope this interest continues, because she will make an excellant nurse one day!

Wednesday, January 14, 2009

Surgery Date

My eye surgery has been scheduled for Feb. 9th. I saw Dr. McKinnon on Tuesday. He feels that my eye pressure is ok for Dr. Afshari and himself to proceed with my surgery. The pressure was 12 in each eye. Dr. McKinnon will be placing drain tubes in my eyes to help relieve the eye pressure due to the glaucoma. During the same surgery Dr. Afshari will be doing my cornea transplant. She will be using a plastic cornea rather than a donor cornea. The plastic cornea has the benefits of the body not rejecting the cornea and with the plastic cornea the cornea will not become hazey like with a donor cornea. The major drawback to the plastic cornea is that their is a very high risk of infection. So I will have to take antibotic eye drops for the rest of my life. This is a small price to pay to finally have clear vision once again.

Wednesday, January 7, 2009

Surgery Postponed

My eye surgery has been postponed for now. My cornea specialist wants me to have a visit with a glaucoma specialist just to make sure that my eye pressure is ok for surgery. I have an appointment with Dr. McKennon (glaucoma specialist) on Tuesday, Jan 13th. We will see where things go after that visit.

Thursday, January 1, 2009

Happy New Year!




HAPPY NEW YEAR!!!!! It is hard to believe that another new year is upon us.




Here are a couple of Christmas pictures of Emily taken at Preschool. Unfortunately we were unable to have our own professional portraits done for Christmas. Our schedule was just too full this year.